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zoe96 01-16-2009 04:51 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Hi there --

I just wanted to quickly say thanks again for all the well wishes! They must be working, because I am feeling much better than I expected. I was a little unsteady from the anesthesia, and I had a horrible cramp yesterday, but it mostly subsided by yesterday evening. I actually also had a D&C as well (my doctor said just to be cautious) and think the cramp is from that. So here I am a little over 24 hours later, and I have not yet had any bleeding, and I haven't taken any pain meds since they gave me some Vicodin in the hospital yesterday. Right now I am considering myself very lucky, although I am resting, and will continue to do so throughout the weekend. Now once I receive my good news that they got it all, and that this treatment is all I need, then I will truly be happy. My doctor said I should have the results in 5-7 days, so I will update you when I receive my good news. I am thinking positively, and have no reason not to. My doc said things went well. So please, just a few more prayers and good wishes, and then hopefully I will get the desired result!!!

Everyone have a great weekend, and thanks so much again.

Pickle Eyes 01-16-2009 08:00 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Yay! I'm glad you are feeling good (except for a few cramps)! When I saw the thread bumped I said, 'Yay, my friend posted!" :)

I had a D&C with my CKC, also. I think they do that to check the uterus to see if the glandular cells are involved up there. Mine came back fine. It was just a "check it out."

You know, I don't know that I bled after my cone. Maybe I did. Heck, I've been under anesthesia 5 times from Dec 07 to June 08, so I don't remember very many things from that time period! lol I know I was fine to return to teaching on Monday (I had my cone on a Friday). I was a little afraid or returning, but it was only because I didn't know what to expect. By lunch on Monday I knew I'd be fine and didn't worry any more about "returning to work after the cone."

You know you are in my prayers! (((hugs)))

Pickle Eyes 01-17-2009 11:08 PM

Re: adenocarcinoma in situ -- cone biopsy
 
I found those images. Yep. Those are the ones I saw long ago. They are helpful!

I'm glad to hear you are doing so well!

We're having a good weekend. We went to a friend's house for their son's birthday party. The kids played well together (even after all of the kids-games) and the adults stood/sat around and talked. It was nice! :)

What did your doctor say your restrictions on lifting were? It seems like I had lifting restrictions for a few weeks post-cone.

Hugs!

zoe96 01-18-2009 04:55 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Sounds like you are having a great weekend! My doctor didn't give me specific lifting restrictions that I can remember. He did say I could probably go back to work after two days, but since I had my surgery on Thursday, and Monday is a holiday at work, I don't actually have to go back til Tuesday. My work is actually very good to me, and doesn't really require lifting much anyway, so I'm lucky that that won't be a problem. And of course I'm not lifting anything at home! I was actually supposed to be on vacation since last Friday, but obviously canceled my trip to take care of this. Upside is that work wasn't expecting me to be there anyway, so I should have an easy time of it next week as well.

Now I'm just trying to stay calm and positive until I receive my results. I sound like a broken record, but every now and then I start thinking what if....I just want to hear that they caught this thing and my body is clean!!! For now, I'm grateful that the surgery went well and I'm feeling good.

Hope to have some good news to report very soon!! Enjoy the weekend!!

zoe96 01-19-2009 05:26 AM

Re: Please bring your attention to the posting policy.
 
Dear Pickle -- I hope you don't mind, but I have one more question for you, and I apologize if I asked this already (I looked quickly through your posts on this thread but didn't see the answer -- but then I'm a little anxious today so maybe I missed it!). I know you said your first cone diagnosed the Ia1, but did you have clean margins? I'm assuming you did not since you had this diagnosis. I'm getting a little anxious about my cone results -- and started having a little discomfort and bleeding last night, which is worrying me a bit, although I think maybe it's just part of the healing process and/or I'm overdoing it a bit. I also am looking for info on how accurate the cone is, and how much faith I can have in it assuming I come back with clean margins. I'm afraid of some cells having jumped, and therefore being outside the borders of a clean margin. Although I'm hoping that I have margins large enough that that would be impossible, but now I know I'm getting greedy. I also don't know if there is such a possibility.

Anyway, thanks again for everything!! Have a lovely day!!

Pickle Eyes 01-19-2009 11:16 AM

Re: Please bring your attention to the posting policy.
 
Hey, Zoe! Ask any questions you wish!

I had not talked about my margins. I *think* I had clear margins, but can't remember exactly.

When it comes to your discomfort and bleeding, that is normal. Bleeding may not occur right away, but can occur afte 4-10 days and that is part of the healing process. And yes, doing too much hurts. Take it easy. Don't carry/push heavy stuff. Lay down. Pamper yourself!

You know you are still in my prayers! (((hugs)))

zoe96 01-21-2009 05:59 AM

Re: Please bring your attention to the posting policy.
 
I got my results from the cone biopsy yesterday, and just like every other aspect of this ordeal, the news was even worse than could have been imagined. It showed invasive cancer, with the deepest lesion being 5mm, although there were clean margins at the top end of the cone. Worse, the entire surface of the cervix (1.6cm or 16mm, which was the size of the cone sample) shows a lesion. When I had the colpo on 12/17, there were only two 1mm lesions; now on 1/15 there is involvement of the entire cervix. My doctor cannot explain why this is so seemingly agressive and why it is moving so fast. Now I am even more upset that my doc's office held on to my results from 12/19 until 1/9. That's three weeks, and maybe they could have gotten a hold of this sooner.

I am scheduled to see the oncologist tomorrow to be staged, but from what I know of the FIGO guidelines, the best I can hope for is Ib2....this is a nightmare. I will let you know what my exact diagnosis is. I now have to worry about lymph node involvement, as well as bladder and other problems. I can't believe this nightmare that keeps getting worse and worse. My doc says I did everything right with my previous care and check ups, but after reading various things I think there are a million times I should have run to be checked out, and a lot of red flags that maybe I should have sought a second opinion way before November. I can't help but feel that my ignorance led to this, even though I considered myself to be on top of my medical care. Unfortunately I believed my long time doctor who told me things were fine and not to worry.

I have been reading up on hysterectomy, which breaks my heart since I wanted babies so much. Now on top of probably losing that ability, from what I've read sex is going to be no good either, between obviously losing body parts, problems with dryness, nerve damage, et cetera. I just can't believe how much having this HPV is punishing me. I'm hoping that maybe something can be done to at least preserve as many body parts as possible, even if they are no longer functional. I don't want even the ability to enjoy sex to be taken away from me as well. This is just unreal.

I would say that I hope to post some good news soon, but I am done with the hoping for the best. Each time I have, the outcome has been way worse than anyone could have predicted. Right now I'm just waiting to hear what other hideous thing is wrong with me and what else will have to be taken away.

Drafly 01-21-2009 06:53 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Zoe,

I am deeply sorry to hear of your most recent news. As someone who has been dealing with HPV induced cancers since 1991 I can truly empathize with your current situation.

What I think is important here is that you do not blame yourself for your current situation. You could only have acted on the information you had at the time. You cannot go back, based on what you now now, and expect that you could have done anything differently.

I have great concern regarding the lax approach to HPV by so many doctors. The more I read from posts on this forum the more it convinces me of their ignorance regarding just how devastating this disease can be. I learned the HARD way!!! I too have felt that I have been taken "piece by piece" over the past 20 years and while I never intended to pose for Playboy it certainly does have an impact on my own sexuality and self esteem.

Do you have anything else going on such as increased stress (separate from this situation) or any medical condition requiring you to take steroids?

I too have had results "held", been given erroneous information, been suggested to have significantly debilitating procedures and have learned to 1) demand answers to things like why your results were held for 3 weeks or 2) gotten second opinions when I didn't feel comfortable with the information I was being given and 3) stood up to doctors whom I felt were ignorant of the disease and its consequences on MY life.

Now with squamous cell cancer having been found in the rectum in Nov 08 after having had invasive squamous cell of the anus previously requiring resection, radiation and chemo, AND previously having vulvar, vaginal, cervical and labial HPV lesions it certainly has been a nightmare as well.

Hard as it may be, try to take it a day at a time or even a minute at a time if you have to. I found that every time I said, "It can't get any worse" it was as though somebody said "Want to make a bet", so I just stopped saying that. May sound silly but what the heck. Have they determined the types of HPV causing the cancer? If so what was it?

You'll be in my prayers. PS I used to live in Branford

Pickle Eyes 01-21-2009 07:45 PM

Re: adenocarcinoma in situ -- cone biopsy
 
((((Oh, Zoe))) I'm so sorry to hear this news. I am dumbstruck! Know that as I read your post I said prayer after prayer for you! I'm glad you have an appointmett so soon with the gyn/onc. Take your written list of questions. Is there any way you can take someone else with you? It helps to have 2 sets of ears.

I just don't know what to say right now except Dragonfly has some good advice to just take this one day, hour, minute, moment, BREATH at a time. Sometimes it seems to come down to "this breath". You are in my thoughts and in my prayers! ((((((hugs to you)))))

zoe96 01-21-2009 09:10 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Dear Pickle and Dragonfly --

Thanks so much. I am still in a state of disbelief, and just want this all over with as soon as possible. I really can't take the fear and uncertainty. At this point I'm afraid to hope for anything, because each time I hope for the best and remain positive, then prepare myself for something a little worse, it comes back waaayyyyy worse than I could have imagined. I want to fight this, but feel like I just can't. I'm doing everything I can, yet I feel like no one is taking good care of me and I don't understand why. Although my doctor is very sympathetic, he also doesn't have great follow up, and seems to only respond to me when it's an emotional thing. He called twice to check up on me yesterday, then blew me off today when he was supposed to schedule a CT. I decided to call the office to make it happen ASAP, and couldn't take the appointment (that I got for myself!!) because he never told me I'd have to not eat for four hours. I have barely eaten in the last two weeks, and had just eaten something an hour earlier after not eating since Monday. Just my luck. Now I have to go tomorrow, before meeting with the oncologist. I really hope that we can figure this thing out definitively tomorrow, and get me scheduled for surgery Monday or Tuesday. I just want to know that someone is getting a hold of this and stopping it!!!!

Pickle -- I actually have a herd of people going with me tomorrow. I am very lucky to have a cousin who was a nursing student, and who is going through all of this with me, and is up on the research and my options. Both she and my mom are going in with me initially, and then she will stay with me after the initial stuff, since I don't need my mom sitting in listening to all of my personal concerns and reasons for being against a hysterectomy and other various treatments. She does not need to hear my concerns about sex after all of this! She's my mom and just wants me well, but I don't think she gets the psychological component of it. Luckily my cousin knows my feelings, and can help with that as well. I also feel better that my aunt is going to be there for my mom, since I'm really worried about what this is doing to my mother.

Dragonfly -- thanks for everything, and I'm so sorry that you've been battling this for so long. I can't imagine what you've been through, and hope that one day soon they find a way to keep people from suffering through what you (and all of us here) have been through.

I have to look at my old records, but I think I was never tested for HPV before May 2008. I seem to remember my doc at that time saying this was something new they were doing. That was when I first found out I had HPV, but I guess that doesn't mean I didn't have it before. I had been finishing my bachelor's and then master's while working full time, and there were a couple of rough semesters in there, but then from spring 2007, and especially fall 2007 to March 2008, was under extreme stress trying to finish my thesis (which I did!). I really attribute any breakdown in my immune system to that. I spend 10 weeks from mid-January 2008 to March 2008 with a recurrent cough/sinus infection/flu-ish thing that took me through two or three rounds of anti-biotics. I'm also asthmatic and use an albuterol inhaler, sometimes heavily, sometimes not at all. I also remember being on steroids maybe once or twice because of the recurrent thing last winter. I thought I was doing the right thing, and went to the doctor, but now in retrospect I wonder if that didn't hurt me in the end.

Not sure on which exact strain(s) of HPV I have, but hopefully will get some answers to that very soon.

Small world -- Branford is not far away! Although I would love to change my personal info so it doesn't show so specifically where I live but can't figure out how to change it. If you know, please let me know!!!

Thanks again, ladies, for all your support. I will probably keep posting, since I want others to be aware of exactly what can happen -- not to scare anyone, but to make them realize that despite what the doctors tell you, the worst really can happen and you need to be very proactive with your care. When I first found this board, I was disappointed at how many people start out a scare story and then disappear. Did it work out well for them, or was their story even more horrific? The wondering just makes your imagination run wild....

Pickle Eyes 01-21-2009 09:44 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Zoe, I totally remember the feeling of being out of control of my body. I SOBBED while waiting to go in for my cone. They couldn't get get my IV started or get the doctor to me fast enough (to sign the release for surgery - had to happen before they drugged me). As soon as I signed the release they pushed in the versed into my IV. I have to say I calmed down pretty dern quickly, but I was in hysterics moments before.

I remember sobbing, "I can't control my body, I can't control what it is doing, I can't control what it will do. I can't control ANYTHING" The nurse, anesthesiologist, doctor, my husband and I think someone else were there trying to comfort me and NOTHING but the drugs helped. I have to say that after I got that out of my system (the hysterics) I felt a little more in control.

I also have to say that going to the gyn/onc was a HUGE relief. I wasn't thrilled about going. Her office is in a "Cancer Center" and that had me freaked out. When I got there, the receptionist sent me to the "financial counselor" to talk about payment. THAT freaked me out and I ended up crying (and not just a few tears) in her office. It was so bad she offered tissue, went and got me a bottle of water and hugged me when I left her office. It ends up, all she told me was "Every time you come you just pay your regular copay of $x" I had myself all worked up thinking I'd need a financial counselor to deal with my cancer. It ends up I just made things worse in my head.

Worrying is totally normal. What I am about to say is easy to say, but hard to follow: don't waste a good worry. Listen to what the doctor says about your treatment plan/options. Learn what you can about your options. And try not to worry.

When I went to my gyn/onc she laid out my treatment options. I had several surgery options and my "need to have surgery by" date was somewhat flexible (within a few months). So I was able to pick a time that was convenient for me and would be less stressful than "right away." I've read so many women say that going to their first gyn/onc appointment was somewhat of a relief because it is comforting to know there is a plan of action - even if we don't like the options.

While I know it is difficult for you to hold hope right now, know that I am holding it for you right now. When you feel you can hold it again, I'll pass it back to you. It is safe with me right now, so don't worry. You'll get it back! (((((hugs)))))

I'm so glad you've got the herd going with you tomorrow! There are so many facets to a cancer diagnosis. And you are right, some people can handle all of the discussion, others only part of it. My parents are 80 and 87 (mom and dad) and they just don't need to know some of these details. I figure as long as I have a place to talk about each concern, no one has to be "all" for me. Get your support from where you can. The important thing is to be supported.

I never found out what strain(s) of HPV I have. I guess it is just safe to say I have at least one strain of high risk HPV (which caused the cancer). I feel like I have been very careful (with very few partners), but you just never know what they have shared, and with whom, and what THEIR histories are. :shrug: We do the best we can with what we know.

Again, you are in my prayers and thoughts! Let us know how the CT and your appointment goes! (((((hugs))))))

zoe96 01-22-2009 05:25 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Dear Pickle --

Once again thanks so much, for your caring, prayers and sharing. Aside from knowing that I'm probably not going to like any of my options, I'm also terrified at how fast this is moving, and just want my surgery NOW. I also can't help but think how my previous gyn blew it and did not every check me properly after my first abnormal pap or tell me signs to beware that maybe there was a problem. Then my bigger regret is that in August I was going to go to a fertility clinic but decided against it and decided to wait and see....and if only I'd gone, they would have probably found this months ago. The final blow is that my current doctor's office had the report showing the adenocarcinoma in situ from the colpo on 12/19, and they held it until my 1/9 appointment; at the 12/17 colpo he said things looked good upon exam, and my pathology came back with two 1mm lesions. By 1/15 and my cone surgery, he said the entire 1.6CM of cervix were diseased, and the pathology came back with 5mm of invasion upwards (with clean margins) and the 1.6cm diameter did not have clean margins. How I went from two tiny lesions to a completely diseased cervix in exactly four weeks defies explanation. I am sitting here thinking every hour is making this thing grow more and more.

I also have a lot of very personal concerns regarding the effects of a hysterectomy, even though I'm hoping there's some miracle new and innovative treatment that can spare me going through that. I don't even want a trachelectomy, but at this point I'll be lucky if I even qualify for that. Pickel, I think rather than post more scary stuff on this thread I'm going to post a question on the hysterectomy board, and if you feel comfortable enough answering some of my very, very personal questions, I would love to hear your take on it. I read some posts on that board, and none of them were good or comforting, and a lot of them didn't sound like the poster was a very reliable source of info.

I am going for the CT this morning and oncologist this afternoon. I am going to have him give me something to calm me down, because I really can't take this. I just want to be medicated until my surgery, and then I will deal with my mental and emotional well being after I fix my physical problems.

(((hugs))) back to you, and thanks so much for everything. I promise once this ordeal is over (if it ever is, and right now that's not looking possible) I will pay back the favor to whoever else may need someone in the future. Your kindness and willingness to share is amazing.

XXX

Pickle Eyes 01-22-2009 07:28 PM

Re: adenocarcinoma in situ -- cone biopsy
 
I hope your CT and appointment with your gyn/onc went well. I thought of you several times today. I know you'll report in when you can. ((((hugs))))

You know, this reminds me of something I was going to tell you last night. When my regular doctor (a family medicine dr who has done my pap for 5 years or so) got the hrHPV diagnosis she told me it wasn't anything to really worry about - especially with my history of good paps. I was panicking. Well, within a week I was back in her office asking even more questions about HPV and was STILL panicking. She said, and I remember verbatim, "The hrHPV is a long way from cancer, you would have to be diagnosed with CIN I, CIN II, CIN III, and carcinoma in situ before you ever had a cancer diagnosis." First of all, she assumed it would be squamous (carcinoma), second of all, she figured with my history that it would happen sequentially. I've talked to her several times since my diagnosis and she said she still looks at my chart and shakes her head. She didn't fathom that I'd skip from good paps every year for 26 years to hrHPV to adenocarcinoma in situ without hitting the steps in between. I guess she's learned a good lesson. Don't assume! I have to say that before I was diagnosed with cancer she "usually offered" the HPV test to women over 30. After I was diagnosed she offers it to EVERY woman 30 and older! I'm glad she is doing that. I'm not glad I was the reason, but I am glad she is pushing the testing more. I am also confident that she is more likely to send a woman for a colpo than she was before. Hopefully more women will have dysplasia diagnosed sooner. That's my hope.

When it comes to having surgery right away, I don't know how soon they can do the surgery after a cone/LEEP. The cervix swells a lot and has to heal. I suspect the cervix may need 4-6 weeks to heal before they can do more surgery. But it doesn't hurt to ask!

[QUOTE]How I went from two tiny lesions to a completely diseased cervix in exactly four weeks defies explanation.[/QUOTE] That is what I don't understand. And then there is the matter of them holding the information. THAT makes me want to say vile things to them! I guess, they figured it was "just" the two lesions. :shaking head:

I read the hyst board (here at HB) every day so I'll see any of your posts over there.
[QUOTE]
I will pay back the favor to whoever else may need someone in the future. Your kindness and willingness to share is amazing.[/QUOTE]
See, and I worry about talking TOO much on these boards! ;) Seriously! I check the board DAILY and usually several times each evening. I went through most of my diagnosis by myself. I normally am an open person and share my worries with my friends, but only ONE of my friends knew what was going on medically, and mostly emotionally with me. Other than that I was on my own for 3 months (from HPV diagnosis to adenocarcinoma in situ diagnosis). I can't explain why, I just suddenly became private about it. I remember how afraid and alone I felt when I found the boards and am forever grateful for the women who wrote to me. I hate the idea of a woman coming here, confused and afraid, and not getting a response.

Perhaps it is just my compulsive/obsessiveness! ;)

Seriously, I want to help any woman who comes here to seek help. I'm thankful when I can!

Write when you can my friend!

zoe96 01-22-2009 08:51 PM

Re: adenocarcinoma in situ -- cone biopsy
 
I had my CT scan today as well as the visit with the oncologist, and both made me feel much better than I have in days. The CT showed no evidence of any abdominal or other invasion, so that was good news. The radiologist and staff were also extremely kind to me, and he even stopped what he was doing to read my films right then and come over and report this to me right away. I was so relieved!! He also got my reports right over to the oncologist, so when I arrived for my appointment he had everything.

The meeting with the onc was incredible. He is the nicest, sweetest man ever! He diagnosed me as Stage Ib (he doesn't differentiate between b1 and b2 for some reason), which of course didn't thrill me, but at least it's still Stage I. Although I don't think so, he says that this was still caught very early, and he actually used the word "curable," which was the loveliest word to hear!! Better still, he said I am a perfect candidate for the trachelectomy. So while I certainly never wanted to lose a cervix, at least that is all I'm going to lose...plus the pelvin lymph nodes, but that's okay. Best news is I can keep my uterus, and still be able to have children -- although he says they like you to wait a year, but then I'd have to hurry up, since by that time I will be 40. Even if I don't end up using it, I don't want to lose it!!

He did say he wanted me to heal a little more before having the next surgery, and wants to schedule it for 4-6 weeks from my cone, which will put me at the end of February. He said from the looks of things and from the cone pathology report it appears that most, if not all, of the cancer was removed with that procedure, and that what is left is probably nothing more than strands that are not yet lesions, so there's no fear of them being a problem between now and when I have the surgery. So at least I don't feel like there's cancer running rampant through me anymore!!

I also found out that my previous gyn was using the older, not as reliable pap, which is probably why I didn't show abnormal cells earlier. Who knew! If I had any clue, I would have made sure I had the liquid based pap performed. So ladies, make sure your doctor uses the better pap! It makes a real difference in detecting things as early as possible! I was also comforted to find out that my new doctor was apparently very cautious with me, and as the onc said, did a great job in detecting this. So while I'm still mad at him for making me wait three weeks for the colpo results, I am glad that he did all for me that he did.

Pickle -- I decided not to post on the hyst board, as I was hoping I wouldn't get to that point, and also I didn't want to get frightened by posts of those who had bad experiences. I figured I'd cross that bridge if I ever had to -- and so far it's looking like I won't have to. But thanks for being on the lookout for me!!!

I will keep you posted on my progress. I am going to Sloan for a second opinion, mostly to ease my mind and have someone re-evaluate my cone biopsy. My doc said my insurance won't pay just to have my results reread, but they will pay for a second opinion, and the facility doing the second opinion will have their own pathologists analyze my biopsy. So it will be a day in NYC for me, plus a little more peace of mind. I am so lucky to be living here, as there are very few doctors who do a trachelectomy, but I have one right here at Yale, plus NY and Boston each have one guy that does them, and neither are that far from me. It's terrible that this isn't more widely available!!!

I'm also going for an MRI and a PET scan, again mostly for peace of mind, while checking for signs of lymph or other organ involvement, as well as to more accurately place exactly where and how large the tumor is.

Oh yes, and my new doc gave me some much needed Ativan to calm me down....between the bit of good news and the pharmacological assistance, I am hoping to finally get some rest and a good night's sleep!!

Hugs to all!!!!

Pickle Eyes 01-23-2009 08:23 PM

Re: adenocarcinoma in situ -- cone biopsy
 
I am sooooo glad to hear this news! I've already said a prayer of thanksgiving! :huge sigh: I don't even know what else to say right now. I am just so relieved and grateful that your appointments went so well and that you are feeling better about what is coming up! (((((hugs)))))


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